Horrible esophagul manometry experience :(

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girl_geek
Regular Member


Date Joined Oct 2009
Total Posts : 58
   Posted 12/11/2009 11:29 AM (GMT -6)   
Before I scare anyone who has not had this procedure, let me reassure you that my doctor said I was NOT a normal case and most people do much better than me ;)  But I just thought I'd complain a bit here since most of you would be able to relate!
 
So I really wasn't *that* nervous going into the procedure, I figured the worst part would be the gagging since I have a strong gag reflex -- well, I was wrong, that was not the worst part ;)  Normally, the nurses insert the probe into your  nose and down your esophagus, then the doctor comes in just to do the swallow tests.  Well, apparently I have deformed sinuses or something because they couldn't even get the probe in the first nostril they tried, it got stuck somewhere in my sinuses!  (I do get a lot of allergy-induced sinus headaches, so I think the next time I see my doctor I'll ask if he wants to x-ray my sinuses or something!  Maybe I have a deviated septum or a blockage?)  After poking and prodding for a while they gave up and tried the other nostril.  This didn't work so well either, so they had to call the doctor in who was finally able to insert the probe.  Now I've never done well with pain, needles, etc. so all the poking around in my sinuses (which I'll admit was painful) first made me light-headed, then my hands and feet felt tingly and were trembling for basically the entire procedure!  The nurses said my hands were freezing and they looked purple, but I couldn't tell they were cold!  I tried to relax and think about other things but I couldn't stop trembling -- even my doctor made a comment about my body "protecting itself" very well!  My nose was also bleeding (but it's been bleeding easily in this dry winter air) and I was swallowing blood... overall it was NOT a pleasant experience! :(
 
As for the gagging, that wasn't bad -- I only gagged when the end of the tube went past the back of my throat (and again when they removed it) -- once the tube was down into the esophagus, I could feel it my throat but it didn't make me want to gag.  For some reason, what really grossed me out (more of a mental thing than anything physical) was when they looked in my mouth to see the tube in my throat --  yes, I know the tube was there, but it grossed me out to think that they could see it! lol
 
Once they finally had the tube in place, the doctor actually did two rounds of swallowing tests.  Then he said he was not liking the readings he was getting, and that either the probe was not inserted correctly or I have pretty bad motility :(  He said sometimes the tube can get folded up inside your esophagus, but they did every trick they knew of to straighten it out, including inserting a length of tube much longer than my esophagus so it would go into my stomach then straighten out when they pulled it back up!  (I didn't even feel this though -- I only felt the tube in my sinuses and throat.)  So then I had to sit with the tube in place for 10 minutes while they brought in a portable x-ray machine to check the tube was inserted correctly.  The doctor said it was in the right place so I guess that means I have poor motility -- I didn't get a chance to talk to him after the procedure but I'll talk more at my follow-up in two weeks.
 
So I think they said the procedure normally takes 15 minutes or so.  By the time it was all done, I'm pretty sure it took me at least 45 if not 60 minutes of trying to insert the tube and then the swallowing tests and x-ray :(
 
But after the test, once I had a few minutes to calm down and stop trembling, I felt fine -- slightly sore sinuses and throat but I've had colds that felt worse!
 
Whew!
 
So if I do have such bad motility, what are my options?  From my limited understanding you need good motility to have any surgeries, so will I be stuck with diet changes and/or meds forever?  (Obviously I'll ask my doctor about this but I'm just curious to hear from other people!)
 
Interestingly, I never took my Nexium yesterday (due to fasting for the test) and I didn't have any more acid reflux than normal.  I was also pleased to find I didn't feel sick to my stomach after swallowing blood!  Makes me wonder if my diet changes are doing more than the meds to help with my symptoms?  Or can some people skip a day of Nexium without relapsing?


Diagnoses: GERD, small hiatal hernia, allergies (haven't been tested yet)
Medications: Nexium (GERD), Singulair (allergies), Tazorac (acne)
Note: I suspect my GERD was caused by taking antibiotics for acne.  Please be careful about taking antibiotics when not necessary!


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/11/2009 4:45 PM (GMT -6)   
I should of warned you if you have a deviated septum you can had some troubles. I have a small deviated septum and I had some discomfort with the inserting. I shook with my test, too.

I've skipped nexium for a day a couple of times and had no symptoms.

So is your surgery off?

Joy

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 12/11/2009 11:28 PM (GMT -6)   
I had an even worse experience with manometry, had it put in over a wire to keep it straight- after the wire was put in with an endoscope which just barely squeezed down my nose.  They found poor motility.  That's why I got the Toupet fundoplication.  I would not have been able to swallow past the full wrap.
 
As long as you don't have Nutcracker esophagus they can do the op, just not a full wrap.
Alcie
 
 


girl_geek
Regular Member


Date Joined Oct 2009
Total Posts : 58
   Posted 12/12/2009 12:24 PM (GMT -6)   
I don't have a surgery scheduled, but my doctor ordered the manometry to see what options would be available. I'm not even sure if my GERD is bad enough for him to recommend a surgery at this point or not -- I still have some symptoms but it is a lot better with diet changes and meds. But I'm also young enough (28) that I would consider a surgery so I don't have to fight with this for the rest of my life... We'll see what he says at the follow-up!

I've never been told I have a deviated septum but after this experience I'm thinking I probably do ;)

Alcie -- what is "Nutcracker esophagus"?
Diagnoses: GERD, small hiatal hernia, allergies (haven't been tested yet)
Medications: Nexium (GERD), Singulair (allergies), Tazorac (acne)
Note: I suspect my GERD was caused by taking antibiotics for acne.  Please be careful about taking antibiotics when not necessary!


Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 12/12/2009 2:47 PM (GMT -6)   
Girl-
Google it. There are nice pictures. It's when you have esophageal spasms - one of the dysphagias. Wikipedia has a good description. Yeah, I know wiki is reputed to be unreliable, but it's not bad for a first description.
Alcie
 
 


girl_geek
Regular Member


Date Joined Oct 2009
Total Posts : 58
   Posted 12/21/2009 2:44 PM (GMT -6)   
I had my follow-up for the manometry today, and apparently the tube was folded up in my esophagus during the test -- when the nurse told me "the x-ray was fine" I guess she just meant they were able to take the x-ray, not that the tube was in the right place! And I guess the doctor gave up on trying to get the tube in place since they had tried several times before. Yuck. All that trouble and we didn't even get any results! However, the doctor has not mentioned getting another manometry so I'm not going to bring it up ;)

I also scheduled my second EGD for the end of January -- during my November EGD they found some stomach irritation and they weren't sure what was causing it, so they want to see if it's changed at all. But at least I get to sleep through the EGD, I don't even remember my first one! :)

Otherwise my doctor just wants to wait and see what the EGD shows, so until then he wants me to stay on Nexium and continue my diet.
Diagnoses: GERD, small hiatal hernia, anxiety, allergies
Medications: Nexium (GERD), Lexapro (anxiety), Singulair (allergies), Tazorac (acne)
Note: I suspect my GERD was caused by taking antibiotics for acne. Please be careful about taking antibiotics when not necessary!


Stormienite
Regular Member


Date Joined Dec 2009
Total Posts : 186
   Posted 12/23/2009 9:02 PM (GMT -6)   
Oh bless your heart!!!  Didn't they give you anything at all to relax you?  Sounds like medieval torture!
Rapid Cycling Bipolar Disorder (and about a dozen other things)
300mg Lamictal
90mg Pamalor
60mg Prevacid
2mg Niravam (Xanax)


Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 12/23/2009 10:46 PM (GMT -6)   
Stormie
No, they can't give you meds for relaxation! The idea is to see what happens during swallowing. It's not uncommon to have problems getting these tubes down since they switched to thin, flimsy ones. They curl up at the slightest excuse. Mine went into my trachea a couple of times before they put it in with the nasty endoscope that they had to squeeze past my deviated septum.
Alcie
 
 


Stormienite
Regular Member


Date Joined Dec 2009
Total Posts : 186
   Posted 12/23/2009 11:39 PM (GMT -6)   
OMG You're stronger than me.  No way I'd sit through them digging into me like that.  There has to be a better way.
Rapid Cycling Bipolar Disorder (and about a dozen other things)
300mg Lamictal
90mg Pamalor
60mg Prevacid
2mg Niravam (Xanax)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/24/2009 2:16 PM (GMT -6)   
I admitt it is a very difficult test to go through. You just have to detach yourself and not think about what is happening.

Joy
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